Date Event Time since first MRI Time until death
Jan 9 Sadie falls at school, apparently injuring her right leg. – 1 month 1 year 6 weeks
Jan 11 Sadie begins physical therapy. – 1 month 1 year 6 weeks
Feb 6 After four weeks of therapy, no improvement. Therapist sends Sadie for an MRI of her brain. 0 1 year 2 weeks
Feb 7 The MRI shows a large mass in the top right hemisphere and smeary areas in the left hemisphere. Tentative diagnosis of MS. Sadie gets a second MRI, this time including her spine, and a spinal tap. 1 day 1 year 2 weeks
Feb 8 No evidence of MS in Sadie’s cerebrospinal fluid (CSF). Sadie begins a 5-day regimen of dexamethasone to stop the current MS attack. 2 days 1 year 2 weeks
Feb 13 Sadie moves over to the rehab ward to work on regaining right-side functionality. 1 week 1 year 1 week
Feb 27 Sadie is losing more right-side functionality and can no longer stand alone; she’s also having intense headaches. Her doctors order a third MRI. 3 weeks 11 months 3 weeks
Feb 28 The MRI shows growth in Sadie’s lesions: it’s not MS. Her doctors order a biopsy of the top right mass. 3 weeks 11 months 3 weeks
Mar 1 Sadie undergoes the biopsy. Based on reevaluation of Sadie’s MRIs now that MS is out of the picture, it looks like she has glioblastoma multiforme (GBM). The doctors form a tentative radiation and chemotherapy plan (Temodar) pending the biopsy results. 3.5 weeks 11 months 3 weeks
Mar 8 After a week of culturing, Sadie’s doctors know she has a very malignant primary brain tumor, but they cannot determine exactly what type. They send the sample out for a second opinion. 4.5 weeks 11 months 2 weeks
Mar 18 Sadie has either glioblastoma multiforme (GBM) or a supratentorial PNET; Sadie’s medical team decide to treat her for a PNET. They schedule surgery to insert a Port-A-Cath into Sadie’s chest. 6 weeks 11 months
Mar 20 Sadie has the Port-A-Cath surgery. After this, they won’t have to stick her arms anymore to draw blood or give her injections; it will all go through the PAC. 6 weeks 11 months
Mar 22 Sadie begins radiation (targeted head-only) and chemotherapy (carboplatin daily, vincristine weekly). 6.5 weeks 11 months
Mar 29 Sadie begins craniospinal radiation (whole head and spine). 7.5 weeks 10 months 3 weeks
May 1 Sadie begins the last set of targeted head-only radiation treatments. 12.5 weeks 9 months 3 weeks
May 5 Sadie gets her last radiation and chemotherapy. 3 months 9 months 2 weeks
June 19 Sadie’s second chemotherapy protocol (cisplatinum and etoposide) should have started today, but her blood hasn’t rebounded enough to begin. 4 months 2 weeks 8 months
June 27 Sadie gets her first post-treatment MRI. The top right mass has shrunk dramatically, but the tumor in the left hemisphere is still going strong. 4 months 3 weeks 7 months 3 weeks
August 10 Six weeks later, Sadie gets another MRI. The top right mass is stable, but the tumor in the left hemisphere has grown since the last MRI. The report states that the presentation is most consistent with GBM. We’ve done our research; the chance that Sadie will survive GBM is essentially zero. PNETs have much higher survival rates, and on the chance that just might still be what she has, she and we choose to continue her PNET treatment protocol. 6 months 6 months 2 weeks
August 21 Sadie’s finally recovered enough to take the first of 11 rounds of chemotherapy. Today she gets a once-monthly cisplatinum infusion and starts three weeks of etoposide capsules. 6 months 2 weeks 6 months
August 26 Sadie wakes with extreme confusion, double vision, and aphasia (inability to express herself verbally). At the hospital they take a CT scan which shows fluid buildup in her brain. The doctors immediately start Sadie on the highest permissible dosage of dexamethasone for her weight, 15 mg. 6 months 3 weeks 5 months 3 weeks
August 27 The doctors tell us it doesn’t look good; clearly the tumor is still growing. Sadie will continue her chemotherapy, but we should prepare for the worst. 6 months 3 weeks 5 months 3 weeks
August 29 Sadie is nearly back to normal; we come home from the hospital. Sadie’s still on a high dose of dexamethasone (9 mg), plus dilantin to prevent epileptic seizures. 6 months 3 weeks 5 months 3 weeks
September 5 Sadie’s blood values have plummeted; she has to stop taking the etoposide capsules. 7 months 5 months 2 weeks
September 18 Sadie should start the second round of cisplatinum-etoposide today, but her blood still hasn’t recovered enough. Her doctors order another MRI (a month earlier than scheduled). 7 months 2 weeks 5 months
September 22 Sadie’s MRI shows significant continued tumor growth. Her doctors recommend stopping all curative treatment. We concur. 7 months 2 weeks 5 months
December 6 Sadie has her first period in 9 months. It’s just a little spotting, but it’s a good sign: her body has recovered enough to soon be able to spare blood for monthly periods. 10 months 2 months 2 weeks
December 29 Sadie has another MRI with highly unusual results: the two existing tumor sites haven’t grown since the September MRI. This explains why Sadie’s been so stable. The bad news is a new lesion, this one on the back of her medulla oblongata (part of her brain stem). We decrease Sadie’s dexamethasone to 6 mg per day. 10 months 3 weeks 8 weeks
Date Event Time since first MRI Time until death
January 3 Sadie has her second period. It’s much lighter than she used to have, but more than last month’s spotting. 11 months 7 weeks
January 19 After four incredibly stable months, Sadie starts to visibly decline. We’d been noticing small changes over several weeks (worsening double vision, decreased appetite); suddenly Sadie got noticeably worse in the space of a few days: vomiting, constant nausea, sleeping most of the day, loss of interest in all her usual activities (fuse beads, reading), barely able to stand with support. These are likely all changes from the new brain stem tumor site. 11 months 2 weeks 5 weeks
January 25 Sadie’s doctor prescribes Zofran (ondansetron) for her vomiting and we increase her dexamethasone back up to 9 mg per day (also to help combat the vomiting). It works somewhat; she’s still nauseated most of the time and throws up one or more times a day, but the two drugs do seem to keep the frequency down. 11 months 3 weeks 4 weeks
February 1 We start actively using in-home hospice: 3 night shifts a week (11 PM – 7 AM), plus 3 three-hour shifts during the week.
Sadie’s third post-treatment period should have started about today, but it never came.
11 months 4 weeks 3 weeks
February 6 Today marks the one-year anniversary of Sadie’s first MRI. She’s made it twelve months since we first discovered the tumors. 1 year 2 weeks
February 11 Sadie is barely eating and drinking: a few bites here and there, a few sips of water, mostly to take her pills. Swallowing continues to be difficult; we switch to analgesic suppositories (acetaminophen) to help ease her nonspecific, “everywhere” pain. She’s also producing a lot of mucus. She starts having trouble telling when she needs to pee, alternating with feeling the need and being unable to produce anything. She hasn’t had a bowel movement in more than a week. 1 year 1 week 10 days
February 17 Sadie becomes more agitated by the day. We start fentanyl patches for her pain and oxazepam to help her relax, but quickly have to increase these palliative meds to help relieve her discomfort. 1 year 2 weeks 4 days
February 20 Sadie wakes with rapid, shallow breathing. She can’t sleep, even with her sleeping pills. Over the course of the day she stops talking and swallowing. We switch to morphine from a dropper. 1 year 2 weeks 1 day
February 21 Sadie slips into a coma during the night. Her breathing changes over the course of the morning, finally slowing dramatically until no more breaths come. 1 year 2 weeks